I am wanting to know if anyone has told their child about the condition they have (pachygyria). If so would you recommend it to another parent/child and how did your child respond? How have other people coped with maybe some of the behavioral issues as they have become older? I guess I have a lot of questions lol — Thanks for any input
Kim daughter to a beautiful 9 yr old in 6 yr old shoes
I would think that what or how much you tell your child would depend on your child’s age and level of understanding. My son, John, is just finishing grade 4 and is ten years old. My husband and I started talking to him about his condition when he was about three. His ususal reaction was and still is, “It’s not fair!” I quite agree with him that it’s not fair and that many things in life aren’t fair, but I always try to point out that life can still be wonderful in spite of one’s problems.
Susan, Mom to Trey (16) and John (10- right hemisphere PMG/pachygyria)
OH wow, how happy I am to talk with someone who has a child the same age as mine… I hope you don’t mind Thank you by the way to your response on “has anyone told their child” I did end up talking to my daughter and did exactly that, just told her what I thought she could handle and yes it was upsetting to her. Unfortunately we did not know an exact diagnosis until she was in the first grade and then not much about it until almost a year later. I still don’t know much about it. Can you give me a bit of history on your son and family?? If not I understand but boy I just wish I knew more about all of this… Do you have a good Dr who knows about this? Have you found any good sites? Ok I’ll drop all the questions but I do thank you again for your response and I hope to talk to you again soon. My email, (not sure if it just goes through the care site) is mikeandkim2@verizon.net
Thank you, Kim